I've ended up in ambulance followed by A&E for the second time due to thyroid overmedication causing a third thyroid storm in 18 months. Still the doctors will not refer me to an endocrinologist. I feel I'm swinging from Hypo to Hyper and back again regularly now. GPs seem to view it as a defeat if they refer me to anyone or do further tests. I'm now at a point where I am ready to quite my job sell the house whatever...to get this sorted as ultimately this is killing me and has come pretty close twice now. Any ideas who do I talk to apart from my useless GP. The private practices seem to require buy in from the GP to move forward I'm past dealing with the GP as they are no help and just waste huge amounts of time and are not particularly interested unless you're bleeding from the head. Even then I don't that would guarantee their interest.
Looking for a way forward from 3 thyroid storms... - Thyroid UK
Looking for a way forward from 3 thyroid storms AT WIT'S END
Hello Axism and welcome to the forum :
There is no history on your profile : what have you been diagnosed with Graves, Hasimoto's anything ?
What medication are you on and do you have any blood test results you can share with the forum members ?
Many thanks for the reply. I am Hypo (for over 10 years diagnosed but probably longer) and 42 years old I'm reasonably fit or was until the last 18 months of thyroid fun. . I am currently taking 100mg of levothyroxine recently reduced from 125mg after my time in A&E. I think I have been overmedicated for well over a year now with the doctors ignoring my requests for tests. Thankfully A&E listened to me and tested my thyroid level and they confirmed overmedication was the problem. I looking for a way to avoid what are starting to become seemingly regular trips to A&E. I have tried everything with the GP but they seem totally uninterested as I can walk and talk.
Hashimotos disease can do both hyper/hypo at intervals. There is also something called "flush syndrome" when the thyroid puts out a massive dose of thyroxine on it's own and if you are on a dose of levothyroxine or any other medication you will be in a miserable state with elevated BPs and tachycardia. Symptoms vary however, the TSH may not indicate a hyperthyroid state at the time of the flushing. Docs look at it and if it's normal they dont think any further. They send you home with antianxiety medications.
I've had it happen and decided to stay on a lower dose with higher TSHs 10-15. Those flush syndrome episodes make you afraid your NOT gonna die.
Horrid experience! I get tinnitus as a warning I may be getting too much Levo and my voice drops if I'm not getting enough and I'm more accurate than the TSH.
It's always a crap shoot but listen to your body.
I've gone from 100 mcgs of Levo to 12.5??? I feel fine.
Just another angle to consider.
Good luck🧿
Interesting I've had ringing ears for ages. I do think I am swinging between hypo and hyper symptoms. I'm getting hopefully lesser but still horrible non ambulance inducing symptoms this week. I have been tempted to drop to 50mg levo from 100mg I've already dropped to 100mg from 125mg.
You need to ask your GP for your thyroid blood results we need your TSH, T4 and T3. You are entitled to see them because it is the law. I can log in and see mine because my surgery has Patient Access. Once you have them post them on here so members can advise you. What symptoms did you get when you were diagnosed with a thyroid storm and who diagnosed you with one? I am just curious because I had one a year ago because I suffer with hyperthyroid or Graves' disease.
The first responder confirmed my heart rate and blood pressure was through roof after my partner called 111. I had uncontrollable shaking, irregular heartbeat and was going very hot and cold. Once they saw my heart rate and BP the first responder called the ambulance. I was then monitored in A&E until me heart rate had calmed down and they did tests. I will post the test results when I can get them.
This is the Test Result from A&E
Pathology Investigations
Serum TSH level 0.25 mu/L [0.35 - 4.94]
Below low reference limit
Hey there:
A TSH below the reference range doesn't mean much when you are already on thyroid hormone replacement and it's a pity A&E didn't run T3 and T4 bloods at the same time along with the thyroid antibodies.
You can't go ' hyper ' if already ' hypo ' but you can be over medicated or maybe you have Hashimoto's autoimmune thyroid disease, which can be confirmed by an antibody test.
This is when you experience a ' hyper ' phases that are transient and in between times you thyroid function becomes a bit more erratic as over a period of years with every attack your thyroid function is reduced until ultimately you become fully hypothyroid.
Either way it's a bit of guess as we need further blood tests.
I Managed to log onto my surgery website. It looks like they did another test
Serum free T4 level
Order Status Final Report
Serum free T4 level 17.1 pmol/L [9.0 - 19.0]
You need a T3 result but your TSH and T4 don't indicate overmedication. Thyroid storm is a rare complication of Hyperthyroidism so it looks like the Dr was maybe not to experienced with thyroid disease !
My thoughts exactly.
I'm still struggling with symptoms, heart palpitations, sweating, tight throat, feeling very odd at points like I'm going to pass out. I am waiting for more thyroid bloods to be done. It looks to me after reading around as though I am possibly hyper based on the TSH. I will push for more tests.
No you aren't hyper based on TSH, doesn't work like that. You will find the vast majority on here have TSH below reference range, mine is 0.02 but because my T4 and T3 are within there ranges I am not overmedicated. Your T4 is well within range so unlikely your T3 is over range but you need to get it tested to find out.
Ok, so your T4 isn't over range but it's the T3 that is the deciding factor and the thyroid antibodies.
How much warning do you get from feeling fine to having everything go nuts? Minutes? Hours? Days? Weeks? Also, what time of day do you take your Levo?
Probably I would probably say minutes from normal function to collapse. I would say each time it has happened I have felt off that particular day, mainly from exhaustion. The two times I have been tested afterward my levels have been too high according to the A&E doctors.
The results you’ve posted don’t look at all as though you were overmedicated actually. The way you describe this, it sounds more like an allergic reaction to something or intolerance. I find I can have a racing heart and rising blood pressure after consuming sugar (or alcohol). It doesn’t happen every time (which is very confusing) but just happens every now and again, usually when I’m a bit run down.
What brand of Levo do you take? Is it always the same brand or is it pot luck, depending on what the pharmacist gives you?
I think this warrants more investigation than a busy A&E doctor seizing on the obvious because a suppressed TSH does not in itself mean over medication (no matter what your doctors might say).
Time of day, it was morning but I am now changing to night as when I take in the day it seems to make me feel nauseous followed by sweats currently.
If you have any warning of a "thyroid storm" coming then stopping all your thyroid meds for a few days is worth while. Specifically, stop taking them until you start to feel a teeny-tiny bit hypothyroid then start taking your thyroid hormones again but at a slightly lower dose.
However, if your symptoms come on very suddenly then my suggestion probably won't help.
Another possibility is that you are running low on certain nutrients. Have you tested and optimised your vitamin B12, folate, vitamin D, ferritin, and iron? If you haven't then it is worth doing and might help to reduce your intolerance of Levo, particularly in the case of low iron and/or ferritin.
I would also agree with Jazzw - intolerance of or allergy to some of the fillers in thyroid hormone pills is a very common problem. Acacia and mannitol in pills are well known for causing people problems. You should start to take note of which make of pills you are prescribed and start keeping records of which symptoms you develop. It might also help to score your symptoms out of 5 or 10. So, a really severe symptom would score 8 - 10, but a minor symptom would score, say, 1 - 3.
Once you have these symptom records you can start to work out whether problems arise with one particular brand and can then avoid that brand in future.
For some lists of symptoms that you might find helpful :
thyroiduk.org/signs-symptom...
hypothyroidmom.com/300-hypo...
I forgot to mention...
High blood sugar can make me sweat, develop a very fast heart rate, get flushed, breathless and nauseous.
You'll have to look into that possibility for yourself.
Thanks for the detailed information I am requesting the tests now, they checked my blood sugar in hospital and it was apparently good and in range. Part of was thinking am becoming diabetic or something.
Blood sugar fluctuates all the time in most people. Eating a slice of bread or a doughnut will raise blood sugar, at least for a while. In a healthy person their blood sugar won't rise that much and will be quickly dealt with by their pancreas producing insulin. But for people who are insulin resistant they can end up with extremely high levels of blood sugar because their body doesn't respond well to insulin, and their blood sugar takes a long time to be dealt with.
Whether you are insulin resistant is something you'll have to research and work out for yourself.
If your feelings of thyroid storm arise after you've eaten a tub of ice cream or a large slice of cake then you could start to suspect that you are on the way to becoming diabetic and your problem isn't thyroid-related.
Just testing TSH and Ft4 is completely inadequate
For full Thyroid evaluation you need TSH, FT4 and FT3 plus both TPO and TG thyroid antibodies tested. Also EXTREMELY important to test vitamin D, folate, ferritin and B12
Low vitamin levels are extremely common, especially if you have autoimmune thyroid disease (Hashimoto's) diagnosed by raised Thyroid antibodies
Ask GP to test vitamin levels NOW
Recommended on here that all thyroid blood tests should ideally be done as early as possible in morning and before eating or drinking anything other than water .
Last dose of Levothyroxine 24 hours prior to blood test. (taking delayed dose immediately after blood draw).
This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip, best not mentioned to GP or phlebotomist)
Is this how you do your tests?
Private tests are available as NHS currently rarely tests Ft3 or thyroid antibodies or all relevant vitamins
List of private testing options
thyroiduk.org/getting-a-dia...
Medichecks Thyroid plus ultra vitamin (doesn’t include folate)
medichecks.com/products/thy...
Thyroid plus vitamins including folate (private blood draw required)
medichecks.com/products/thy...
Thriva Thyroid plus vitamins
Blue Horizon Thyroid Premium Gold includes vitamins
bluehorizonbloodtests.co.uk...
If you can get GP to test vitamins and antibodies then cheapest option for just TSH, FT4 and FT3
£29 (via NHS private service ) and 10% off if go on thyroid uk for code
thyroiduk.org/getting-a-dia...
monitormyhealth.org.uk/thyr...
Medichecks - JUST vitamin testing including folate - DIY finger prick test
medichecks.com/products/nut...
Medichecks often have special offers, if order on Thursdays
Come back with new post once you get results
Thankyou for the info and links, I have ordered some private tests. So hopefully I may get some answers.
Axism...
I have experienced Thyroid Storm Twice .. I have Graves Disease , though now Euthyroid ..
if I were you, given that you are now at Stalemate with your GP , I would certainly make a private appointment at your nearest Private Hospital .
Look up their Endocrinologist List and read reviews if possible so that you choose well ... or get advice on who to choose here by asking for answers by Private Message .
Only then will you get straight answers .....as You will be starting with "a clean slate" so to speak and your Private Endo will be able to understand your history clearly .
Let's hope you do that and get moving in how to treat this situation so that you get healthy quickly
When I was at my wits end with my GP and had no diagnosis .. it was exactly what I did .. and believe me it was the beginning of a new and healthy Chapter in my life !!
Meantime ...educate yourself on supplements to take that will help you .. plenty of great advice on here to do that !
Best of Luck
Mx🌹
Hi thanks so much for you encouraging story. I have booked some private tests and I am giving the GP some stick as well, they are getting both barrels from now on. So hopefully one way or another we'll get there.
Excellent !!
Both barrels ...and then ...Some more !!!
You will Always find that no-one cares more about YOUR Health .. than YOU DO ... so go for it ....Empower yourself ,
If I hadn't , then I would still be the wreck of the woman I was, before my Diagnosis.
It pains me still to remember how I was virtually on my knees .. wishing I was gone ...because my doctor would not help me .. telling me it was MENOPAUSE !!
Be brave .. learn everything you can about your precious Thyroid and how it is Vital for the smooth running of your body and your performance .
Best of Luck to You
Luv Mx🌹
Hi Axism
I myself have had 2 episodes of thyroid storm for which I was hospitalised I had been diagnosed with hyperthyroidism my TSH was none detectable my T4 was raised but my T3 was off the scales.. My symptoms were much the same as you have discribed I couldn't climb a small flight of stairs without feeling like I'd ran a marathon total exshaustion my heart was beating out of my chest I also sweated profusely as you said the A&E diagnosed thyroid storm.. My second trip I passed out in A&E I came to in a small room not knowing what had happened unfortunately i could not take the anti thyroid medication but my gp insisted I try, I just kept throwing it back so in turn it wasn't in my system to work hence my thyroid storms, like your gp mine is a waist of time it's due to him I lost my thyroid, I don't think gps/endos really understand how having a thyroid problem can affect us who suffer from it. The human body is a strange conundrum and no matter how much training a gp or endo has they don't know everything. I was so glad I found this fantastic site and I've learned so much about the working of our thyroids and about blood results, I've found if you don't question your endo or gp they will just leave you to suffer.... As I said I lost my thyroid may last year and I'm still struggling I still have hyper episodes still under the endo/gp but they just seem to push me from pillow to post more bloods now I'm feed up with it I just want to feel OK again!! So post your results get informed, their are plenty of great people on here who can guide you about blood results and symptoms and what to do.. ❤️
Good luck on your journey
Karen ❤️
Thanks for the post, It helps as I realise I'm not alone with this. Currently I leave the doctors office made feel like I'm the idiot for asking the GP to check out what's causing this recurring potentially fatal problem. It's crazy. I hope you feel better soon too.
Yes, doctors are good at doing that when they haven't any answers to the questions.
My Medichecks results, Note I've had another episode not nearly as bad as the episode that put me in an ambulance.
My TSH has changed from 0.25 (Results from hospital) to 9.91 (medicheck)
CRP HS: 2.01 mg/L
FERRITIN : 128 ug/L 30 - 400 R
FOLATE - SERUM: 18.39 ug/L > 3.89 R
VITAMIN B12 - ACTIVE: 119 pmol/L > 37.5 R
VITAMIN D 46.2: nmol/L 50 - 175 R
TSH: 9.91 mIU/L 0.27 - 4.2 R
FREE T3: 3.07 pmol/L
FREE THYROXINE: 11.1 pmol/L
THYROGLOBULIN ANTIBODIES: 13.7 kIU/L < 115 R
THYROID PEROXIDASE ANTIBODIES: 13.2 kIU/L < 34 R
I have another test on the way from my GP as well
I would start another thread showing those results if I was you incase it gets missed.
Thanks will do!
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